and other ways Cystic Fibrosis has F#$%*d Me

Everything I know about the healthcare industry is the result of being a frequent customer. I find the process of medical research interesting, but don’t really care about the business of it. Unfortunately, having broken lungs has made me extremely valuable as of late and so I have to pay attention wether I like it or not.

I’m currently taking Vertex’s Orkambi, If you’d like to read all my feelings about it, you can click here, here, and here. But the tl;dr version is that it’s a fine drug for me. I had some side effects during the trial, but I was relatively healthy going into it, so I was able to even everything out and get a little bump in lung function in the process. I find it makes it a little easier to maintain my health, but I’m not ready to jump on the “wonderdrug” train.

I have bits and pieces of a book about my experience in the Vertex trial scattered on my hard drive, but I’m not making a lot of forward motion on it. Partly because writing a book is a painful experience, but mostly because I can’t decide if it’s helpful (or interesting) to anyone for me to be whining about how this drug isn’t quite what I expected. I’m not dead. And with new healthcare bill debacles hitting the US news every day and YesOrkambi fighting for the drug in Ireland, maybe now is not the time for a nuanced look. I’m one person (and a confirmed asshole). This drug could make my nose shoot nacho cheese and I’d still complain there were no chips.

If they could hand me the money for just one month, it would fix all of my problems.

Though I know there’s a price to pay for being on the cutting edge in a niche market, I feel like $240,000 a year should get me some chips. (I guess “chips” in this case would be “the ability to stop taking other medicines).

But instead of a nacho extravaganza, we’re getting a price increase.

Back in April, it was reported in the Wall Street Journal that “15% of patients discontinue [Orkambi] within three months due to side effects.”

And from the “probably should have seen that coming” department, here’s an article in Boston Business Journal where Vertex has decided to increase the cost of Orkambi by 5%. From the article:

By contrast, many big pharmaceutical companies routinely take annual price increases of close to 10 percent. Cambridge-based Biogen, for example, raised the price of its best-selling drug for multiple sclerosis, Tecfidera, by 8 percent in January.

Orkambi is widely available in the U.S. through insurance coverage, and Vertex does not expect the price increase to affect how much patients pay out of pocket, the spokeswoman said.

Then there’s this piece about Vertex not wanting to disclose their $1.3 million in federal lobbying. I guess the $1.3 million in lobbying is a drop in the bucket compared to their $980 million in sales of Orkambi, but it’d be nice to know how it was spent.

Really, I don’t know how any of their money is spent, other than the money they gave me to be in one of their studies. Maybe the 5% increase is well deserved and has nothing to do with stock prices or a rumored merger and acquisitions. I’m still a little salty from that time they got an earlier than expected FDA approval on Orkambi and changed “everyone in the study will get Orkambi for two years if they want it” to “Let’s see if we can get some money out of your insurance.” It’s like being a kid again and having mommy and daddy fighting about big money while I’m looking around for $10 to buy a Spider-Man figure. I feel helpless while this big battle rages around me.

Even with all my nitpicks, I’m still on Orkambi and it’s helping to keep my lung function stable. It’s not like I’m going to boycott until the price drops. But at the end of the day, it feels like a lot of people are getting rich off of me being alive. I just wish I was one of them.

May is Cystic Fibrosis Awareness month, which always makes me feel like I should write a stirring, insightful piece about the challenges of CF. In lieu of that, please accept these 5 things I wish someone would have told me about dealing with CF.

Bonus Entry: If you find the orange enzyme, you get to tour the factory!

Considering all the hype about the conditions surrounding this year’s games, it’s ironic that Olympic fever is hard to catch this year. Time delays, shoddy editing, and apps that barely work are taking a lot of the joy out of the spirit of competition. And then there’s the commentary. Even with 7 commercial breaks per half hour and random outages, you should still at least pretend someone is watching.

Look, I don’t like to criticize unless I have a solution to offer, so I’d encourage everyone/anyone at NBC to hit play on the below video of me doing commentary over the iOS gaming sensation Justin Smith’s Realistic Summer Sports Simulator and book me a flight to Rio immediately.

In a perfect world, I’d get to wake up in PM daylight every day. Not too late—noon or 1 is fine—but I don’t want to deal with alarm clocks and bed times. I’d get up, do my stuff, maybe get a workout in, eat a pile of nachos and go to work. Yes, I’d still work—I’m a man who loves a project—but none of this eight hour workday stuff. I’d work until I was done for the day, be it 4 hours or 12. Then I’d go home, probably eat more nachos, and do my research (which is fancy talk for fall down a Wikipedia hole). I suppose this world wouldn’t have noise restrictions either, so I could really get into it if I started reading about Musique Concrete or something.

However, this world is not perfect. I know this because my taint is on fire.

As I get older, I’ve really started thinking of time as a finite resource. I always thought I did, but without any real responsibility (beyond breathing, that is), it’s easy to labor under the illusion that there’s still time to do everything. It’s the subtle difference between “I might as well do this, I’m going to die” and “I need to get this straightened out before I die.” The truth is, the world does not need a sequel to Can’t Eat, Can’t Breathe anymore than it needed Can’t Eat, Can’t Breathe in the first place, which is to say not at all. Still, it remains the piece of creative work I’ve gotten the most feedback on and it’s one of my few projects that ended up in profit so in my head a sequel makes sense as a time investment.

It’s been a while since I’ve written anything here. Not because I haven’t wanted to (I’ve got a lot of ideas kicking around) and not because I forgot my login credentials (even if I totally did for a while) but because I’ve been chasing a White Whale of a project since sometime last January. I’m not quite finished with it yet, so I don’t want to talk too much about it (there’s still a 50 percent chance that it will be complete shit), but since I’ve got that whale in my sights, I’ve managed to carve out a little time each day to write a Helpful Holiday Hint on my Facebook page and the Helpful Holiday Twitter page. Brad Sheridan of Why Do I Rock? has even drawn comics for a few of them. Here are a few of this year’s classics:

No snow for a Christmas morning snowball fight? Try using chilled baseballs.

If your siblings wanted to get presents too, they wouldn’t have had kids.

They can’t prove you bought it at the dollar store.

Throw everyone’s name into a Santa hat and have the oldest child pick one out. That person gets to run Grandma over with a reindeer.

Panhandling is acceptable as long as you’re ringing a bell.

You can save a lot of money by telling your child they’re on the naughty list.

To teach children how other cultures celebrate Christmas, have them build some sweet Air Jordans and mail them to the kids down the street.

Bring some holiday pizzazz to your baked goods by adding two tablespoons of glitter.

Wow, what a lineup! I’ve still got three more days of this left, so friend me on Facebook or follow @HelpfulHoliday on Twitter (or just follow me at @allhallowsevil and we can ignore the holidays together).

Halfway through my failed attempt to eat the Burger King Halloween Whopper into a bat symbol.

When I was 5 or one of those other dumbass ages when you do dumbass things, I had a two day obsession with cranberry juice. Part of it was that I was at my dad’s house and cranberry juice was the only thing that didn’t taste like bullshit, but most of it was because on my second glass, my father’s roommate said “Wow, you’re going to pee red if you keep that up.”

I kept going for two goddamn days didn’t see so much as a darker yellow. Continue reading →